Todd's Journey

Hello everyone,

I know many of you have been asking about Todd as it has been a while since his last post. In that post you may recall that Todd described his challenges with increasing pain in his upper leg/backside and a reduction in his mobility.

We now know the cause of this pain: cancer was detected in Todd's left hip bone. This is what is causing him so much pain.

The good news is that the doctors have implemented a plan to control Todd's pain and to treat the cancer. Todd will be meeting with the radiology oncologists at the Ottawa Hospital in the coming days to prepare for radiation therapy. The doctors have explained that this type of cancer responds well to radiation treatment, so the prognosis is good for a return to being cancer free.

Thank you for all your love and support,

Jamie

We have reached a pivotal moment in my cancer journey. Today, my oncologist confirmed that I am currently cancer free. Although there may still be microscopic traces of cancer in my body, they are not visible or detectable at all. My scans are the equivallent to someone who does not have cancer.

The bigger part of the news is how exceptionally well I responded to the chemotherapy and immunotherapy treatments. For someone to be diagnosed with high-grade, muscle evasive bladder cancer that has metasticized to their lungs, to achieve cancer free status in five months is remarkable. Only 5% of bladder cancer patients have done this.

Now this does not mean that my cancer will not be back. But it does up the chances that it may stay away. As mentioned in a previous post, if I can go two years of cancer free status, the likelihood it will return lowers. That will be my next goal and milestone. (well, every scan from this point on will be a milestone)

So what's next? Well, I will continue to be monitored for cancer signs going forward, and may at some point go back on some form of immunotherapy maintenance. They are not sure of this option yet, as they continue to work on lowering my creatinine levels. I also have a follow up with a nephrologist (kidney doctor) just so they can have a quick look at my kidneys and treat any damage that may have been caused by the immunotherapy.

My oncologist also ordered an MRI be done on my lumbar spine area to get a better look at what might be going on with my leg pain and stiffness. Once they have figured that out, they will be able to treat it appropriately. At this point they just aren't sure what is going on with it.

Finally, my urological oncologist believes it's time now to take out my ureteral stents. He will make arrangements for that somewhere toward the end of April. With the stents out, the frequency of urination (which keeps me up at night) should go away, and I should be back to normal urinary frequency.

If not for the leg issue, and the stents in place, I would pretty much be back to myself pre-cancer. (with the exception of the weight gain and puffy face due to the steroids, and the immunotherapy) The weight should go back to normal for me, but it's going to take some time for sure.

My abdominal scan has come back showing very positive signs of improvement. There was no further spread of the cancer to the abdominal region. Reproductive system, kidneys, pancreas, and ureters all looked good with no signs of abnormalities. The only comment on my bladder was that it was contracted, however that would be expected since there is little urine in my bladder at the moment.

My cancer will never be "cured" as it had already spread beyond the bladder, however it can be controlled and kept from growing and spreading. That ultimately is the goal for long term living with cancer.

The recommended course of action for me now is to receive immunotherapy which will teach my own immune system to keep attacking the cancer so it is kept under control. That's the best we could have asked for at this point.

Overall the results are very positive in terms of controlling my cancer. Now we move to a phase of keeping it under control.

I will have a consult with Dr. Macrae (the radiology oncologist) to see if any radiation is needed or required now.

That's the results update. Look at is as positive for sure. Just got to keep my cancer in check now.

Hello everyone,

We have finally received the results of my CT scans. There were two scans done. One on my chest (to review the progress of the bladder cancer cells that had spread to my lungs), and one on my abdomen (to review the bladder cancer progression or recession).

I have received the first of the two scans which was the chest and lungs scan. The CT scan showed that most of the detected nodules prior to chemotherapy are almost undetectable now, and the larger nodules have shrunk considerably in size. There were no further indications of spread, nor were there any additional spread through the lymph node system. The report indicated that there were no new nodes of concern. This indicated that I responded well to the chemo treatment as it related to the cancer in my chest.

The only negatives detected on the report was calcification of my coronary artery, and a very small hiatus hernia. Both are treatable and I suspect that the doctors will be referring me to further doctors to deal with those issues.

It's been 12 days since my chemotherapy ended. I am still awaiting the results of my latest CT scans to determine what, if anything, the chemo has done to the cancer.

I am slowly starting to feel a bit better, and less fatigued. Every day I get a little bit more energy back, and my requirement to nap during the day has lessened. At night now, I am almost entirely off my sleep aids, and getting back to somewhat of a normal sleep pattern.

The only two issues I continue to deal with are; my nephrostomy tubes, and my bladder infections.

As for the nephrostomy tubes, they really are an inconvenience of having to cart around collection bags on each side of my body. It really does restrict my mobility somewhat. In addition, while the tubes do remove the majority of urine from my kidneys, it leaves very small amounts going into my bladder. This may sound like a minor issue, but I just want to get back to urininating normal amounts of fluid.

I still suffer a bit of PTSD from the days where I was retaining and passing very small amounts of urine, so now when I only pass small amounts (due to the nephrostomy tubes) I sometimes get anxious and worried again. It is very difficult for me to overcome the past traumatic experiences from June. The smallest issue can prompt me to suffer mental anxiety.

I have finally stopped taking my anti-anxiety medication as it wasn't something I wanted to be on for a long time. Perhaps that is why I may still have some anxiety but I will overcome that. I await the moment that Dr. Morash tells me I can get rid of the neph tubes.

As for the bladder infections, Dr. Morash started me on a daily dose of antibiotic as a strategy to prevent further bladder infections before they start. The first antibiotic that he prescribed me makes me quite ill, so he switched me to a new antibiotic today.

Around the homefront, we finally got all our Christmas decorations and tree up for the year. We finished our Christmas shopping (thanks to Amazon), and just have to wrap them up now.

Anyhow that's the update for now. The official discussion with my oncologist will be this Thursday, so we will definitely know what's next by the end of the week.

Hi Everyone,

It looks like the results of my CT scans won't be quite ready for the Monday video update, so I will delay that update until later next week when we have official results. I will post the video update on Friday so that I can also update you on the go forward cancer treatment plan.

As for my current health, I am anemic again, so the fast fatigue comes on pretty much anytime I do anything. I will have to wait for my hemoglobin numbers to increase on their own for the next few weeks before the fatigue lessens.

I have had a few bouts of vomiting mostly related to the new antibiotic medication I am taking. I have found if I take it with food it has less of an impact on me, so have started doing that.

That's the update for now.

Here is the Monday video update.

Mark your Calendar

The results of my cancer treatment scans will be revealed on Monday, December 11th during my morning blog. Good or bad. So mark you calenders and tune in for the results. Keep your finger crossed.